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GlobalSkin Collaborations with EUPATI

Collaborations EUPATI

 

In 2021, GlobalSkin proudly launched the Continuous Learning Series by partnering with the European Patients’ Academy on Therapeutic Innovation (EUPATI) offering GlobalSkin Members an exciting opportunity to take part in the Open Classroom Training.  

This Training expands patient leaders’ knowledge and understanding of medicines research development, clinical trials development, and more, all with patient engagement top of mind! This training enhances your role as a patient advocate, give you expertise in critical areas, and can be tailored to fit your personal learning goals.

There are several ways GloablSkin Members can participate from taking part in one or two courses, all the way to becoming a EUPATI Fellow. The versatility and options are based on Members’ needs, capacity, and importantly their time. Read on to learn the WHO, WHAT, WHY, and HOW of this inaugural Learning Series. 

WHO IS EUPATI?

Starting as a multi-stakeholder public-private partnership in 2012, EUPATI recently established itself as an independent non-profit Foundation in the Netherlands.  

It is a successful programme that provides education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development (R&D), and to improve the availability of medical information for patients and other stakeholders.” - EUPATI 

 

Collaborations with International League of Dermatological Societies (ILDS)

GlobalSkin partners with the International League of Dermatological Societies (ILDS) on several initiatives including co-hosting webinars for GS ILDSGlobalSkin and ILDS Members, bringing topics related to COVID-19 to the forefront, and coordinating access to key subject matter experts.

Memorandum of Understanding

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin), and the International League of Dermatological Societies (ILDS) are delighted to announce the next stage in our collaboration and partnership through a formal Memorandum of Understanding (MoU).  The statement was signed on March 31, 2021.

The ILDS and GlobalSkin have been working towards shared goals since GlobalSkin’s founding in 2015 during the World Congress of Dermatology in Vancouver Canada. Since that time, the relationship has continued to grow and flourish. This MoU will enhance our collective efforts – now and in the future – to improve the lives of dermatology patients through better access to care and treatment, and address stigmatisation, persecution, or economic disadvantages due to their conditions. Together, we are stronger.

Please read the full statement here.

 

GlobalSkin has recently been featured in the ILDS Newsletter

 

Co-hosted Webinars:

  • September 22, 2021, "Changing the Way the World Sees Dermatology Through the GRIDD Project", at 10:30 - 11:30 (EDT) | 16:30 - 17:30 (CEST)
    Presenters: Jennifer Austin, GlobalSkin, CEO (Interim),and Rachael PattinsonGRIDD Researcher, PhD Candidate, Cardiff University. We will also be joined by Bill McCue, patient leader and founder of the PRP Alliance and Dr. Ramesh Bhat, Board Member of the International League of the Dermatological Societies (ILDS) and the Vice-Chair of the ILDS Patients’ Organisations Working Group (POWG). 


  • February 2021, "Creating the Rare Disease Movement: The Power of the Patient Community", with guest speaker, Dr. Ségolène Aymé, Emeritus Director of Research at the French Medical Research Council (INSERM) and the founder of Orphanet, talking about the integral part patients and patient leaders play in the rare disease movement.

  • May 2020, a GlobalSkin’s COVID-19 Virtual Townhall, “Understanding COVID-19 & Its Impacts on Dermatology Patients”, with Dr. Esther Freeman. Professor Luca Borradori, Chair of the ILDS Patient Organisation Working Group (POWG), spoke about the active role that the ILDS has taken in engaging with the global dermatological community during COVID-19. For more information on ILDS and their work on COVID-19, please click here.

  • November 2020, "The Role of Nurses in the Management and Overall Medical Pathways of Dermatological Patients", with Elfie Deprez (a PhD student with a Masters in Nursing, specializing in psoriasis) discussing the integral part nurses and nurse practitioners play in the patient journey. 

GlobalSkin Members can access the webinar videos or rgister to attend in our Members Only Area.


GlobalSkin participates in two Committees led by the ILDS:

  • ILDS Patient Organizations Working Group - read more about this working group here.

  • World Congress of Dermatology 2023 Scientific Programs Committee – this is the first time a patient representative has been included in the program planning.

 

 

GlobalSkin Collaborations with EFA

GS EFA Collaboratoin

 

WAED Logo Transparent

World Atopic Eczema Day (September 14) was launched in 2018 to raise awareness about the disease globally and across Europe through an initiative coordinated by GlobalSkin and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA). 

GlobalSkin and EFA collaborate each year on the development the Campaign Guide, which includes key messages, graphics and other useful tools, so that together with our shared patient organization members we run a united awareness day.

Learn more about this year's World Atopic Eczema Day Campaign.

GlobalSkin’s Collaborations with the EADV

GlobalSkin attended the EADV’s 30thGS EADV Collaboaration Anniversary Congress which took place on September 29-October 2, 2021. For the fifth consecutive year, GlobalSkin and the EADV Patient Working Group have co-organized a special joint session. This year’s topic is “Physical and Emotional Pain of Dermatological Conditions: Helping You Support Your Patients”, and is taking place on October 2, 2021 - 10:00-12:15 CET.  All patient organizations & attendees are invited to attend.   

We are excited to have the GRIDD project featured on October 2 during the Open Communication Poster Presentation during this year’s congress. Rachael Pattinson, GRIDD researcher from Cardiff University will present: “Development of the Patient-Reported Impact of Dermatological Disease (PRIDD) Measure: A Concept Elicitation Study."

As of February 2022, GlobalSkin is a signatory to the EADV Joint Statement on skin cancer prevention in the context of the European Union’s Beating Cancer Plan. 

 

In 2020, GlobalSkin was invited to sit on the European Academy of Dermatology and Venerology (EADV) Patient Association Working Group (PAWG), as the first patient organization representative. This is a testament to the positive working relationship that has been developing between the organizations for some time. It also speaks to the connectedness of GlobalSkin to the European dermatology patient community which makes up just over half of our membership.

GlobalSkin Executive Director Jennifer Austin is actively engaged on the PAWG in planning the annual jointly organized special interest session (focused on patients) at the EADV’s Annual Congress.

Jennifer has also been providing advice on the EADV’s Patient Corner website page to ensure it is inviting and supportive from a patient perspective. 

In 2020, GlobalSkin also launched a COVID Townhall Series; these webinars were focused on how the coronavirus was affecting dermatology and dermatology patients. Working with stakeholders like the EADV to bring expert presenters together to share their knowledge and research with GlobalSkin Members.  Click here to learn more.

 

EADV Newsletter featuring work with GlobalSkin 

A Guiding Role for the EADV - Summer 2021 

Putting Medical Dermatology on the EU Policy Agenda - Summer 2021

Improving Your Patient Reviews Through Patient Satisfaction - September 2020

 

2020 EADV Virtual Congress

EADV Virtual HighlightsGlobalSkin was present for the fifth year in a row at the European Academy of Dermatology and Venereology (EADV) Congress.  On October 30, 2020, Christine Janus, GlobalSkin CEO had the privilege of giving a plenary presentation directly to the EADV membership and Congress attendees. Her presentation, “A Shared Vision: Changing the Way the World Sees Dermatology”, was the first plenary presentation given by a dermatology patient advocate during the main Congress.

Other Congress Highlights:

  • Watch the EADV Faculty Highlights video here to learn the key messages that were part of the plenary presentation.

  • Plenary Session Presentation, by Christine Janus on Patient-Reported Outcomes – “What matters to patients? A Patient’s Perspective”.  

  • 4th annual special joint session co-organized by GlobalSkin and the EADV Patient Group on “Improving Your Patient Reviews Through Patient Satisfaction”.  This multi-disciplinary event took place October 30 and featured four patient organization leaders (including GlobalSkin President Simmie Smith and Christine Janus), clinicians, psychologists and, a dermatology nurse association representatives 

  • GRIDD scientific poster – an audio presentation of the latest phase of GRIDD was available in the e-poster area.
     
  • GlobalSkin Booth – a 3D virtual booth was created as part of the Patient Village at the EADV Congress.

Other areas of collaboration between GlobalSkin and the EADV are in progress and there will certainly be more to come from this important relationship.

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